Illness and Diagnosis Resources

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This section includes websites about specific illnesses and diagnoses.

A site about vonWillebrand's disease by Aventis Behring

American Heart Association
General heart health information; has a link specifically about children

American Kidney Fund
Provides financial assistance, education, research and programs for patients with kidney disease

American Liver Foundation
General liver health info; search by state

American Lung Association
General lung health information

Asperger's Association of New England
Provides information, advocacy, resources, and support groups for people with Asperger's

Children's Liver Association for Support Services
All-volunteer, nonprofit organization dedicated to serving the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation

Children with Diabetes
On-line community for kids, families and adults with diabetes

Cystic Fibrosis Foundation
Information and resources for people with CF

Forum of End Stage Renal Disease Networks
Nonprofit organization that advocates on behalf of its membership and coordinates projects and activities of mutual interests to ESRD Networks

Hemophilia Galaxy
Baxter website which offers a link to the Baxter Assist program; can enroll if using a Baxter product

Joslin Diabetes Center
Works to improve the lives of people with diabetes and its complications through innovative care, education and research that will lead to prevention
and cure of the disease

Juvenile Diabetes Research Foundation International
Supports research in search of cure of diabetes and its complications; includes site for children with diabetes

LA Kelley Communications
A comprehensive hemophilia resource for educational resources, scholarship programs and a parent empowerment newsletter (PEN)

Little Hearts, Inc.
Provides support, resources, networking, and hope to families affected by congenital heart defects

The National Hemophilia Foundation (NHF)
General information as well as a wonderful resource for free literature (HANDI) on blood clotting disorders

National Kidney Foundation
General information on kidney health, resources for patients and providers

National Organization for Rare Disorders
Maintains database of resource/support organizations for rare disorders, as well as providing information about the disorder; also has medication assistance programs

The New England Hemophilia Association (NEHA)
The local chapter of NHF; can become a member at no charge. NEHA's focus is education and advocacy

Second Wind
Information and support for lung transplant patients and families

United Network for Organ Sharing
Organization which works to promote organ donation and matches donors to transplant patients

The World Federation of Hemophilia
International organization which offers a listing of hemophilia centers throughout the world

Online Resource Locators (Not State Specific)

This section includes general resource information including databases and resource locators for specific places or needs. A good starting place to find possible resources.

Disability Resources on the Internet
Searchable by subject and by state

Family Village
Global community of disability related resources

Family Voices
Resources for children/youth with special health care needs; organized by state
Worldwide resource that provides children with special needs, families and other caregivers with access to comprehensive information and resources; search by state by clicking on map

National Respite Network and Resource Center
Find respite services in local area or when traveling

Yellow Pages for Kids with Disabilities
Search by state

Brave Kids
Help for children with chronic, life-threatening illnesses or disabilities, resource database

National Dissemination Center for Children with Disabilities
Central source of information on Individuals with Disabilities Education Act (IDEA), No Child Left Behind, and other educational resources

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